Accepting the word DISABILITY

Accepting Gabbie's diagnosis has been very hard on all of us, but I think it has been especially difficult for my husband. Of course we all went through all the stages of shock, disbelief, anxiety, and fear. It is not that my husband did not accept the reality of Gabbie's situation. He just has a difficult time dealing with it. Since the beginning, I have been very active in trying to find articles, books, anything that would help me understand what was going on with her. In my mind, the more I learn about it and the more I understand, the more I can help her overcome anything that she faces. And he believes that too, but he still can't research the problem, he can't even look at internet pages of other children with the same problem, but ultimately I think he just can't deal with the thought of his little baby having a difficult time in the future and not fitting in what everyone knows as "normal". There is no doubt that her development is delayed. But there is also no doubt that she has come a long way and we believe that she will be able to accomplish anything she wants in the future. She is very determined and her personality is amazing. Acceptance is a big part of this process, and we already accepted the fact that she has a problem, that her motor skills will be always delayed, that there is (finally) a diagnosis. What we are having a very difficult time now is accepting it as a "disability". What is a disability????

According to Wikipedia, "Disability is the term used to define a restriction in the ability to perform a normal activity of daily living which someone of the same age is able to perform". Well, then there is no denying, my child has a disability. But there are so many ranges of disability, that I never wanted to accept that she had one because I always thought that it was not fair to the kids that have many more serious issues than her. Going to Shriners definitely put things in perspective for us. Gabbie's problems seem so small when we see other kids that have much more serious and debilitating conditions, that I always thought that saying that my kid had a disability wouldn't be right. I am still struggling with that and yesterday I used that word for the first time, and it still didn't feel right:

Luiza, our 14 year old daughter, had an orthodontist appointment. We really enjoy this clinic. It is the same group as my kids's dentist, and we love them. They are always very nice and do a very good job with kids. When it was time to make her next appointment, I requested that it be later in the day, since I work until 3:30pm every day. Every time they tell me that it had to be after the suggested 6 weeks (for braces adjustment) because every parent wants them later because of the kids's school. We usually have to go 8 weeks between appointments because of that. Well, this time the accounting person was the one setting up my appointments and she told me that they would charge an additional $75 a month because that would extend her treatment period. It didn't make any sense to me, because she would still be seen at the clinic the same number of times, so I should be the one to care if her treatment lasted 2 and a half years instead of 2 years, not them. So, for the first time, I said "I have a kid with a disability at home, and I need to save my sick leave hours for her appointments, I am sorry. Is there a way that you can find us an appointment later in the day?" She didn't respond, then she looked at my daughter and said "So, if there is any day that you are not in school, it would be good to come earlier in the day for that appointment." So I replied "No, the problem is not her school, it is that I work and I have to use my sick leave hours with my disabled baby" (just in case she hadn't heard me the first time). She looked at me and said "Well, everyone wants the late appointments." And I said "I understand, but I do have a valid reason..." and she interrupted me and said "Everyone has their own personal reasons that they believe are valid!". I was astonished, mouth open, staring at her. I could not believe that she had just said that. And to add insult to injury, she continued: "That is why my own kids can't get braces yet, because I cannot take the time", and smiled.

What is a parent supposed to do in that situation? I could yell, scream, or as we say in portuguese "make a show". But what or where would that get me? She is just ignorant and rude. So I just became very sad and left the place with tears in my eyes. I was crying out of frustration. Frustration that this is the world my child with a disability will face. This is why my husband has had such a difficult time facing Gabbie's reality. Because he knows all the challenges that she will be facing. We are not talking about physical challenges. Those we already accepted. The real challenges in the real world will be PEOPLE. People that have no idea on how to deal with them. People that do not accept them, people that are rude, people that will hurt them on the way. How do we, parents, cope with that? How do we prevent that from happening? I am still crying about yesterday's incident. I am not ready to deal with more of these. And I thought I was ready. Ready to do whatever I could to help her. I guess my husband was not the one in denial about Gabbie's problems, I WAS.

General updates

Me and my beautiful niece

First I need to apologize for being a lousy blogger. My last post was so long ago and so much happened since that one, that I didn't even know how to start this post. And I even started writing this post more than a month ago and only now I am finishing it up. So well, let's start last year! Days after Gabbie got her braces we traveled to Brazil for the holidays! The trip was miserable but our time there was amazing. Gabbie does not travel well, and the journey was long. First we drove to LA (that alone is a 7 hour drive). At least we went at night and she slept for that leg of our trip. Then we had to wait for 4 hours in an airport under construction, with nowhere to go because we couldn't even check in so early in the morning, and take 2 flights of about 7 hours each to get there. It was miserable. She could not understand why she had to be on our lap the whole time, wanted to go crawling on the floor the entire time, barely took a nap - and that was only because we decided to finally let her sleep on the floor! We were exhausted when we finally got to Rio. On top of all that, Copa Airlines lost my bag - well, technically they didn't loose it, they just didn't have enough space in the second plane and had to leave it in Panama to come the following day! So we finally got to the hotel and had about 40 minutes to get ready for Gabbie's and my niece's baptism. Let's just say I was on go-go-go-non-stop mode and now I don't remember much from that day. To add to that, Matheus (my oldest) even had to go through it all not feeling well (something he ate?), with vomiting and diarrhea, but WE MADE IT. The ceremony was beautiful, my family and friends from Brazil all there! I could write one entire post just on that!

After that hectic day (or should I say hectic 48 hours) it was smooth sailing. We traveled the next day with my parents, my sister, and her family to a little hotel in a beautiful beach in Saquarema, where we stayed for 10 days. Weather was nice for 6 or 7 of them and we enjoyed the beach, the swimming pool, the sun, the food, and most importantly, each other! It was so good to spend time with my family and to give my kids the chance to experience that. It was summer in Brazil and that made it very difficult to have Gabbie wear her braces. We were afraid she was going to get hurt when crawling, because there was no way to have her wearing pants to cover her knees. Too hot for that. And we spent most of the days by the pool or at the beach, difficult places to have her with braces on too. So we let her enjoy some days without them, and maybe just once or twice in the whole vacation we put them on her. She did fine! There she started to try something new. Whenever she wanted to reach for something above her head, she finally realized she needed to go up. So she started to straighten up her legs in the crawling position, with her little buttocks in the air. Huge step for her, because the doctor said that she needed to start stretching up her knees - the contractures on her knees are mild, and he believes that, once she starts standing up, she will be able to stretch them out herself, with no need for surgeries. We were so happy. My dad almost cried seeing that.

Fast forward to today, here is her progress since (I have to fast forward or I will spend 10 posts just on the trip and the amazing time we had, which would be interesting, but not what this blog is all about, sorry). Gabbie now is much more interested in standing up. But unfortunately she cannot support her own weight, so she sits after some fast seconds. The big question in our minds is: are the braces helping? I am not so sure, but I have NOT seen any difference in the angles of her feet, they have not helped stretch at all the contractures, and it is even more difficult to put them on now, because she is very aware of them, and immediately pulls her foot up when I put them on - so is it defeating the purpose????

The frustrating part is that we do not have any appointments scheduled for follow up with any of the doctors. I think that she saw so many doctors that each one is thinking the other is following up, and she doesn't get any appointment. I managed to make an appointment with a physical therapist for next week, so we will see what she recommends. I wish we had some sort of water therapy through Kaiser. It could help her a lot, because now she is starting to understand "walking" even though she can't support her weight. Whenever we hold under her arms and support most of the weight for her, she moves her legs as if walking. So she knows what she has to do, but at this point she can't. We will also talk to the PT about maybe a walking frame to help her.

Meanwhile, she continues to be the most amazing baby! Yeah... I know, every parent probably thinks that her/his baby is amazing, but she is such a happy baby. When we go out, everybody asks if she is always smiling like that, and comments on how easy-going she is. There is nothing more relaxing after a busy day than to come home and play with her, or just watch her play. I bet that although many parents love coming home to their baby, not many can say that it is relaxing. But that is the effect that she has on us. The world stops for a while when we are with her. What an amazing baby!

The roller coaster continues

Gabbie got her braces last week. At first she didn't like them. But she doesn't like anything on her feet anyway. She spends a lot of time trying to remove shoes and socks whenever she can, so it was no surprise that she was going to try to remove the braces too. But the velcro is strong and goes around, so she hasn't figured it out yet. She doesn't seem too bothered by the braces, though - at least not any more than she is bothered by regular shoes. She is still crawling and doing everything she was doing before them. She tends to curl her toes and push the feet upward, and it defeats the purpose of the braces if she is trying to pull her feet up, so we needed to find shoes to go over the braces to pull the toes down, since the velcro part does not go all the way to the toes.

 We literally spent hours looking for shoes, going in every single store and department store at the mall, trying many pairs on, and still have not found one that fits perfectly. We bought a couple of pairs that will do for now, but eventually we will need to buy the hatchbacks that are made for that purpose. They are expensive ($60-70) and they wouldn't be ready before our holiday trip, so we decided to wait for when we come back.

Then yesterday we had the appointment with the orthopedic surgeon. He is a very nice doctor, very personal, very caring. He said that just by reading her files, he thought her condition was much worse, and he was very pleased with what he saw. He said it is not bad at all, but remember - he sees a lot of stuff, so not being bad at all may not mean really that. It just means that, putting in perspective, it could be much worse. He said that she has some flexibility in her feet, and with this condition, it was at its absolutely worse at birth, and that it is not going to get any worse, it will just improve from now. The level of improvement is what is still up in the air. It will depend on how much Gabbie will be able to do in the coming months and years. He doesn't want to rush into surgery because he believes she will stretch much of the contractures herself when she tries to stand and walk. Just like the doctor at Shriners, he believes that the brain commands these things, and since her brain is normal, she should be able to get up and try. And by trying, she will be stretching. And in the future, whatever she can't stretch, then maybe we will think about surgeries. It is a roller coaster. Not only of emotions, but of medical opinions. Every time we see a different doctor, we hear something different. First we hear "be ready for surgeries, she will need many of them and lots of physical therapy", now we hear different. We want to believe in this so badly that we are afraid of believing just to hear something different next month. I want to be able to run in the steady part of the roller coaster for a while. I want to believe that everything will be ok and soon. I want to believe that next year she will be walking. But I can't. Because part of me wants to be ready for the possibility that it doesn't happen that way. Because the more ready I am, the more I can help her. So call me a pessimist, but those of you who know me well, know that I have always been the Pollyanna, I have always been the one to see the bright side of things, but now it hit home too close. So I am hoping for the best, preparing for the worst, like that feeling that you have when you are going up on the roller coaster, but you know that it will go down at some point, you just don't know how soon or how bad, and then hopefully it is just a bump and the ride ends.